Majorly bummed

elenita · May 28, 2009

Hi Jeanna,

As I was saying I greatly empathize with your dilemma-As a 54 year old cfer I have been often puzzled why I had more congestion (inflammation) than other days. I found that taking 8 glasses of water with fresh squeezed lime or lemon greatly reduced that amount of congestion I had-In other words I alkalined my diet. I have found that steroids are like aspirin, they mask the problem and have terrible side effects. I alkaline my diet daily (see internet regarding alkaline/acid foods) and it has changed the quality of my life dramatically. It takes discipline, but this method has no side effects. If I don't alkaline and eat mostly acidic foods for even a day, the cups of congestion follows the next day. My experience with the doctors has been if you complain, they will suggest something (usually of a chemical nature which of course has side effects since our kidneys were not made to filter man-made chemicals)(note: I still take xopenex and pulmozyne along with a alkaline diet) not
holistic. Since the doctors don't have all the answers (or we would not still have problems) I have to use common sense become very aware of the impact of what I am putting in my mouth- inflmation usually has a one day lag effect.

So in the end the "right" thing is what your body individually responds to. My sister is a doctor who also has CF and she disagrees with the above and won't even try an alkaline diet (she needs to see studies). ( I also noticed I have an extreme inflammation reaction to anything that has sugar in it (a former chocoholic) or turns into sugar in the body quickly (ie. wine, non-vegetable starches). Please let me know if you do try it - I would love to hear somebody else's experience-

Lots of hope and love

Elenita

elenita · May 28, 2009

Hi Jeanna,

As I was saying I greatly empathize with your dilemma-As a 54 year old cfer I have been often puzzled why I had more congestion (inflammation) than other days. I found that taking 8 glasses of water with fresh squeezed lime or lemon greatly reduced that amount of congestion I had-In other words I alkalined my diet. I have found that steroids are like aspirin, they mask the problem and have terrible side effects. I alkaline my diet daily (see internet regarding alkaline/acid foods) and it has changed the quality of my life dramatically. It takes discipline, but this method has no side effects. If I don't alkaline and eat mostly acidic foods for even a day, the cups of congestion follows the next day. My experience with the doctors has been if you complain, they will suggest something (usually of a chemical nature which of course has side effects since our kidneys were not made to filter man-made chemicals)(note: I still take xopenex and pulmozyne along with a alkaline diet) not
holistic. Since the doctors don't have all the answers (or we would not still have problems) I have to use common sense become very aware of the impact of what I am putting in my mouth- inflmation usually has a one day lag effect.

So in the end the "right" thing is what your body individually responds to. My sister is a doctor who also has CF and she disagrees with the above and won't even try an alkaline diet (she needs to see studies). ( I also noticed I have an extreme inflammation reaction to anything that has sugar in it (a former chocoholic) or turns into sugar in the body quickly (ie. wine, non-vegetable starches). Please let me know if you do try it - I would love to hear somebody else's experience-

Lots of hope and love

Elenita

elenita · May 28, 2009

Hi Jeanna,

As I was saying I greatly empathize with your dilemma-As a 54 year old cfer I have been often puzzled why I had more congestion (inflammation) than other days. I found that taking 8 glasses of water with fresh squeezed lime or lemon greatly reduced that amount of congestion I had-In other words I alkalined my diet. I have found that steroids are like aspirin, they mask the problem and have terrible side effects. I alkaline my diet daily (see internet regarding alkaline/acid foods) and it has changed the quality of my life dramatically. It takes discipline, but this method has no side effects. If I don't alkaline and eat mostly acidic foods for even a day, the cups of congestion follows the next day. My experience with the doctors has been if you complain, they will suggest something (usually of a chemical nature which of course has side effects since our kidneys were not made to filter man-made chemicals)(note: I still take xopenex and pulmozyne along with a alkaline diet) not
holistic. Since the doctors don't have all the answers (or we would not still have problems) I have to use common sense become very aware of the impact of what I am putting in my mouth- inflmation usually has a one day lag effect.

So in the end the "right" thing is what your body individually responds to. My sister is a doctor who also has CF and she disagrees with the above and won't even try an alkaline diet (she needs to see studies). ( I also noticed I have an extreme inflammation reaction to anything that has sugar in it (a former chocoholic) or turns into sugar in the body quickly (ie. wine, non-vegetable starches). Please let me know if you do try it - I would love to hear somebody else's experience-

Lots of hope and love

Elenita

elenita · May 28, 2009

Hi Jeanna,

As I was saying I greatly empathize with your dilemma-As a 54 year old cfer I have been often puzzled why I had more congestion (inflammation) than other days. I found that taking 8 glasses of water with fresh squeezed lime or lemon greatly reduced that amount of congestion I had-In other words I alkalined my diet. I have found that steroids are like aspirin, they mask the problem and have terrible side effects. I alkaline my diet daily (see internet regarding alkaline/acid foods) and it has changed the quality of my life dramatically. It takes discipline, but this method has no side effects. If I don't alkaline and eat mostly acidic foods for even a day, the cups of congestion follows the next day. My experience with the doctors has been if you complain, they will suggest something (usually of a chemical nature which of course has side effects since our kidneys were not made to filter man-made chemicals)(note: I still take xopenex and pulmozyne along with a alkaline diet) not
holistic. Since the doctors don't have all the answers (or we would not still have problems) I have to use common sense become very aware of the impact of what I am putting in my mouth- inflmation usually has a one day lag effect.

So in the end the "right" thing is what your body individually responds to. My sister is a doctor who also has CF and she disagrees with the above and won't even try an alkaline diet (she needs to see studies). ( I also noticed I have an extreme inflammation reaction to anything that has sugar in it (a former chocoholic) or turns into sugar in the body quickly (ie. wine, non-vegetable starches). Please let me know if you do try it - I would love to hear somebody else's experience-

Lots of hope and love

Elenita

elenita · May 28, 2009

Hi Jeanna,
 
 As I was saying I greatly empathize with your dilemma-As a 54 year old cfer I have been often puzzled why I had more congestion (inflammation) than other days. I found that taking 8 glasses of water with fresh squeezed lime or lemon greatly reduced that amount of congestion I had-In other words I alkalined my diet. I have found that steroids are like aspirin, they mask the problem and have terrible side effects. I alkaline my diet daily (see internet regarding alkaline/acid foods) and it has changed the quality of my life dramatically. It takes discipline, but this method has no side effects. If I don't alkaline and eat mostly acidic foods for even a day, the cups of congestion follows the next day. My experience with the doctors has been if you complain, they will suggest something (usually of a chemical nature which of course has side effects since our kidneys were not made to filter man-made chemicals)(note: I still take xopenex and pulmozyne along with a alkaline diet) not
 holistic. Since the doctors don't have all the answers (or we would not still have problems) I have to use common sense become very aware of the impact of what I am putting in my mouth- inflmation usually has a one day lag effect.
 
 So in the end the "right" thing is what your body individually responds to. My sister is a doctor who also has CF and she disagrees with the above and won't even try an alkaline diet (she needs to see studies). ( I also noticed I have an extreme inflammation reaction to anything that has sugar in it (a former chocoholic) or turns into sugar in the body quickly (ie. wine, non-vegetable starches). Please let me know if you do try it - I would love to hear somebody else's experience-
 
 Lots of hope and love
 
 Elenita

Tumbleweed · May 28, 2009

jeana, keep up the hard work! try not to get discouraged. machines do vary alot and i was told to look at the liters, because that is more accurate. if i were you i would call my doctor's office, tell them what happened, and ask to schedule a pft only visit. or a pft/rn visit.
you may find that you just had an off day, plus the differences of the machines. it may put your mind more at ease, or let you know if there truly is a problem.

one time i blew a number so much lower than my baseline while i was an impatient, and the doctor didn't believe it. just didn't seem right. the doctor had me re-blow the next day and it was back up a bit.

other things can affect them too, like being in pain or being really tired. i would give it another shot at your regular clinic and see how that goes!

Tumbleweed · May 28, 2009

jeana, keep up the hard work! try not to get discouraged. machines do vary alot and i was told to look at the liters, because that is more accurate. if i were you i would call my doctor's office, tell them what happened, and ask to schedule a pft only visit. or a pft/rn visit.
you may find that you just had an off day, plus the differences of the machines. it may put your mind more at ease, or let you know if there truly is a problem.

one time i blew a number so much lower than my baseline while i was an impatient, and the doctor didn't believe it. just didn't seem right. the doctor had me re-blow the next day and it was back up a bit.

other things can affect them too, like being in pain or being really tired. i would give it another shot at your regular clinic and see how that goes!

Tumbleweed · May 28, 2009

jeana, keep up the hard work! try not to get discouraged. machines do vary alot and i was told to look at the liters, because that is more accurate. if i were you i would call my doctor's office, tell them what happened, and ask to schedule a pft only visit. or a pft/rn visit.
you may find that you just had an off day, plus the differences of the machines. it may put your mind more at ease, or let you know if there truly is a problem.

one time i blew a number so much lower than my baseline while i was an impatient, and the doctor didn't believe it. just didn't seem right. the doctor had me re-blow the next day and it was back up a bit.

other things can affect them too, like being in pain or being really tired. i would give it another shot at your regular clinic and see how that goes!

Tumbleweed · May 28, 2009

jeana, keep up the hard work! try not to get discouraged. machines do vary alot and i was told to look at the liters, because that is more accurate. if i were you i would call my doctor's office, tell them what happened, and ask to schedule a pft only visit. or a pft/rn visit.
you may find that you just had an off day, plus the differences of the machines. it may put your mind more at ease, or let you know if there truly is a problem.

one time i blew a number so much lower than my baseline while i was an impatient, and the doctor didn't believe it. just didn't seem right. the doctor had me re-blow the next day and it was back up a bit.

other things can affect them too, like being in pain or being really tired. i would give it another shot at your regular clinic and see how that goes!

Tumbleweed · May 28, 2009

jeana, keep up the hard work! try not to get discouraged. machines do vary alot and i was told to look at the liters, because that is more accurate. if i were you i would call my doctor's office, tell them what happened, and ask to schedule a pft only visit. or a pft/rn visit.
 you may find that you just had an off day, plus the differences of the machines. it may put your mind more at ease, or let you know if there truly is a problem.
 
 one time i blew a number so much lower than my baseline while i was an impatient, and the doctor didn't believe it. just didn't seem right. the doctor had me re-blow the next day and it was back up a bit.
 
 other things can affect them too, like being in pain or being really tired. i would give it another shot at your regular clinic and see how that goes!

RonnieSharpe · May 28, 2009

I wouldn't get too discourgaged if I were you. Believe it or not, PFT's aren't an exact science and many variables can affect the numbers. There are going to be days that you feel like you blew the top off of the machine but the numbers don't reflect it. There will also be days that you are surprised with how well your numbers look in relation to how you feel. I would bet you that if you did PFT's right now, the numbers would be different.

It's always a good idea to keep your doctors in the loop. Just make sure you are staying active and faithful with your treatments while waiting for the appointment <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ronnie

RonnieSharpe · May 28, 2009

I wouldn't get too discourgaged if I were you. Believe it or not, PFT's aren't an exact science and many variables can affect the numbers. There are going to be days that you feel like you blew the top off of the machine but the numbers don't reflect it. There will also be days that you are surprised with how well your numbers look in relation to how you feel. I would bet you that if you did PFT's right now, the numbers would be different.

It's always a good idea to keep your doctors in the loop. Just make sure you are staying active and faithful with your treatments while waiting for the appointment <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ronnie

RonnieSharpe · May 28, 2009

I wouldn't get too discourgaged if I were you. Believe it or not, PFT's aren't an exact science and many variables can affect the numbers. There are going to be days that you feel like you blew the top off of the machine but the numbers don't reflect it. There will also be days that you are surprised with how well your numbers look in relation to how you feel. I would bet you that if you did PFT's right now, the numbers would be different.

It's always a good idea to keep your doctors in the loop. Just make sure you are staying active and faithful with your treatments while waiting for the appointment <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ronnie

RonnieSharpe · May 28, 2009

I wouldn't get too discourgaged if I were you. Believe it or not, PFT's aren't an exact science and many variables can affect the numbers. There are going to be days that you feel like you blew the top off of the machine but the numbers don't reflect it. There will also be days that you are surprised with how well your numbers look in relation to how you feel. I would bet you that if you did PFT's right now, the numbers would be different.

It's always a good idea to keep your doctors in the loop. Just make sure you are staying active and faithful with your treatments while waiting for the appointment <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ronnie

RonnieSharpe · May 28, 2009

I wouldn't get too discourgaged if I were you. Believe it or not, PFT's aren't an exact science and many variables can affect the numbers. There are going to be days that you feel like you blew the top off of the machine but the numbers don't reflect it. There will also be days that you are surprised with how well your numbers look in relation to how you feel. I would bet you that if you did PFT's right now, the numbers would be different.
 
 It's always a good idea to keep your doctors in the loop. Just make sure you are staying active and faithful with your treatments while waiting for the appointment <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Ronnie

Jeana · May 29, 2009